I did do a lot of driving (you say the price of gas is rising? I never notice, just hand over the credit card and hope for the best). And of course it was pouring and, as usual, I was running late (because Charlie’s bus was late because of the rain) and realized (sitting, and sitting, in traffic) that I did not understand the directions I had scrawled down last weekend.

Where was I rushing to?

Well, if you really want to know……….

I guess it’s kind of obvious at this point, but my son has autism and he learns best in an intensive ABA educational program like that at this NJ autism school. But, my son just turned nine and most schools (like the ABA ones he thrives in, at least) only have openings for much younger children. And, while he loves his current school, it is closing in June, forever.

Sorry for the digression, when you live in Autismland there always seems to be so much to explain. So, anyways, I was going to look at a school program for Charlie.

I should have known where I was going because the program is in my in-laws’ town, and I’ve been going to this town for over a decade, but I’m not a Jersey girl, actually, I’m from California, and I don’t have that feel for the roads around here, you know what I mean?

And then after the school visit and talking to the case manager I had to go to work and it was still pouring.

Work? Yes, I know one of the mothers on the Autism Every Day video said that “having a child with autism made it really hard for me to balance my life, to be a mother and have a job,” or words to that effect (sorry, I only got to watch the video late this afternoon while I was getting dinner ready for my son). Yes, I work. No, I work full-time, I did work part-time a few years ago but then I had two part-time jobs. No, “autism mother” was not one of them but yes, it is a full-time job. What “else” do I do? I’m a Classics professor, yes that means I teach Greek and Latin. Yes, to college students. Amo, amas, amat, amamus…...
We had our Latin exam (all six tenses of verbs, ablative absolute, subjunctive……) and then I picked up Charlie and took him to the doctor’s office for a physical. Eye test (he is 20/20), hearing test, blood pressure (three tries till they got it, whatever), 75th percentile for weight and height–yes, he is a big boy. Takes after his father’s family. We were there for an hour and a half, school forms to fill out and we had to talk about the vaccines and Charlie had a moment or two but he was great, superb, 35 minutes in the waiting room and 20 or something in the exam room, he was so good. And he went right to doing an ABA session with his Lovaas therapist (yes, that’s the “47% study” Lovaas) not that that’s why we’re doing it, ABA is the basis for Charlie’s learning–it’s how he learned the best–how my husband taught him to ride his bike. It was a fabulous session and then he had one of his favorite dinners, frozen vegetables and spring rolls. And sat on the porch waiting for his dad.

I am really digressing, I apologize! I guess I must be tired. No, that’s par for the course, I’m an autism mother, goes with the territory. Like that video says, it’s autism every day or more like, autism every moment.

What my life is like? What I’ve had to give up?

Sorry, was I pausing too long? Charlie does that when you ask him a question. In Autismland, you learn to listen to a different beat.

Well, I think you had it backwards–I mean, in Autismland, give means take, as one of my sister autism moms says. You see, it’s not that, as one of the mothers in the video says, “‘I really had to give up to my life,'” or that, as is also said, “‘What’s been taken from him………it’s indescribable.'” What I’ve been given by Charlie, by living and learning in Autismland…..

Sorry, I don’t have words to explain it–kind of like Charlie doesn’t often have words for what he wants to say—when you live in Autismland, you have to learn the language an autistic person speaks.

Comments

I just watched the video, and my heart absolutely BREAKS for those parents. They obviously love their children, and they (the parents) are obviously in extraordinary pain. It’s clear they weren’t just saying it for the cameras – they feel it down to their toes.

I keep wondering why their experience of autism is so different from mine. Is it that Bud is very different from their children? Is it that we have better support than they do? I really want to understand.

I think your question is a great one, Mom-NOS. Personally, I closely identified with the experiences the women in the film described.

From reading your blog, I think that may be because you seem to have a deep and well constituted faith, or sense of spiritual connection. Would you say that is true? Not a flakey, indigo child sort of spirituality, but something grounded in community.

There is also the factor of support. It sounds as though DAD-NOS rocks, much as Jim Fisher does. Perhaps I’m idealizing, but it seems that you and Kristina have strong partnerships that support your parenting.

And it seems that you are able to include Bud in extended family events — with accommodations — which isn’t the case for many autism families.

In my experience it is the isolation that autism parenting can produce that makes it most difficult. One of the moms interviewed talked about that . . . about not being able to go for a bagel with the other moms of kids her age. Another spoke of only being able to socialize with other autism parents. I think it’s the isolation that is so difficult.